Oncology and Liver Diseases Department, King Faisal Specialist Hospital and Research Center, Riyadh, Saudi Arabia.
Pediatric Hematology-Oncology Department, King Faisal Specialist Hospital and Research Center, Riyadh, Saudi Arabia.
Am J Hosp Palliat Care. 2024 Feb;41(2):193-202. doi: 10.1177/10499091231174202. Epub 2023 May 5.
With advances in biomedical sciences, a growing number of conditions affecting children have evolved from being considered life-limiting to almost chronic diseases. However, improvements in survival rates often come at a cost of increased medical complexity and lengthy hospitalizations, which can be associated with a poorer quality of life. This is where pediatric palliative care (PPC) can play a significant role. PPC is a specialty of healthcare that focuses on the prevention and relief of suffering in children with serious conditions. Unfortunately, despite the well-identified need for PPC services across pediatric specialties, multiple misconceptions persist. Common myths about palliative care are identified and deconstructed in light of the most recent evidenced-based references in the field to provide guidance to healthcare providers to address these. PPC is often associated with end-of-life care, loss of hope, and cancer. Some healthcare providers and parents also believe that information like diagnosis should be withheld from children for their emotional protection. These examples of misconceptions hinder the integration of pediatric palliative care and its additional layer of support and clinical expertise. PPC providers have advanced communication skills, are able to instill hope in the face of uncertainty, are trained to initiate and implement individualized pain and symptom management plans, and understand how to improve the quality of life in children with serious illnesses. Improved awareness about the scope of PPC is needed to ensure that children benefit from the maximum expertise and support throughout their complex health trajectories.
随着生物医学科学的进步,越来越多影响儿童的疾病已经从被认为是生命有限的疾病演变为几乎是慢性疾病。然而,生存率的提高往往是以增加医疗复杂性和延长住院时间为代价的,这可能会导致生活质量下降。在这方面,儿科姑息治疗(PPC)可以发挥重要作用。PPC 是医疗保健的一个专业领域,专注于预防和缓解患有严重疾病的儿童的痛苦。不幸的是,尽管儿科各专业都明确需要 PPC 服务,但仍存在多种误解。本文针对姑息治疗领域的最新循证参考文献,对常见的姑息治疗误区进行了识别和剖析,旨在为医疗保健提供者提供指导,以解决这些问题。PPC 常常与临终关怀、失去希望和癌症联系在一起。一些医疗保健提供者和家长也认为,为了保护孩子的情绪,应该向他们隐瞒诊断等信息。这些误解阻碍了儿科姑息治疗及其额外的支持和临床专业知识的整合。PPC 提供者具备先进的沟通技巧,能够在不确定的情况下注入希望,接受过启动和实施个体化疼痛和症状管理计划的培训,并且了解如何提高患有严重疾病的儿童的生活质量。需要提高对 PPC 范围的认识,以确保儿童在其复杂的健康轨迹中受益于最大的专业知识和支持。